Four-year-old Everly Backe of Crystal Lake, Illinois, was diagnosed with a heart defect when her mom was still pregnant with her. As she got older, she couldn’t help but ask her parents questions about her condition and the resulting scars from her heart surgeries — or as she called it, her “zipper."
It was enough to make her parents worry that Everly was starting to feel different from other kids, but her dad recently got a special tattoo to let Everly know that she's never alone — no matter what.
Speaking with CafeMom, Everly’s mom Lauren told us that they first learned Everly had a heart defect when she was 33 1/2 weeks pregnant.
It was just enough time for the parents to research the best hospital and medical team to deliver Everly, “because Everly would need to be at the right hospital to get heart medications to her as soon as she was born,” she says.
Everly was born in August 2017 with “a critical, complex congenital heart defect,” her mom says. “Everly was born with interrupted aortic arch, aortic stenosis, subaortic stenosis, hypoplastic bicuspid aortic valve, and a large posterior malaligned VSD — this is a very rare combination,” she adds.
Everly had three open heart surgeries before she turned 1 — "her first being when she was just 3 days old," Lauren says.
Sadly, she has needed several more surgeries and procedures as she's gotten older, and while each surgery helped her condition, it did leave her with unusual souvenirs: a cluster of scars on her body.
“Everly asks about her scars,” Lauren says. “She has a lot.”
“[She has] her chest incision, five pretty noticeable chest tube drain scars, and a large raised scar covering most of her right foot from an IV extravasation,” the mom continues. “And when she's sun-kissed, you can see lots of little scars all over her neck, shoulders, and arms from IV pokes.”
Laurens says that Everly normally is OK with her scars and her "special heart."
But recently, she's started asking questions like: Why do I have to go to the doctor's office all the time and other kids don't?
“She knows she has the scars because she ‘has a special heart and doctors helped fix it.’ But she's 4 and has a lot of questions still like, ‘Why was I born with a special heart but my friends like […]don't have a special heart?’ And questions like ‘Why hasn't Santa fixed my heart completely if [her brother] Jack keeps asking him to fix it every year since I was born?’” her mom explained.
“She doesn't want to do things like blood draws and getting her nose/throat swabbed, or IV lines placed,” she adds. “Even though she knows the reason is to help her, it's still hard and a lot for a 4-year-old.”
“She also informs us frequently that she asks really good questions. She's a real trip,” Lauren jokes.
The parents told Good Morning America that they started calling her scars her “zipper” because it will eventually have to be opened again for another procedure. Lauren likes to tell Everly that it’s a zipper that doctors can open and close to make her feel better, the news outlet reports.
Matt and Lauren have always tried to be careful about how they talk to Everly about her scars and always try to "frame them in a positive light."
“We tell her how special she is and how they are a badge of courage — it's like a medal she wears around her neck showing how brave she is,” Lauren tells CafeMom. But still — it’s hard to help your kid go through something that’s both so rare and makes them feel different.
Which is probably what Matt was thinking when he told his wife that he wanted to do something permanent to show their daughter that she isn't, nor will she ever be, without support.
“One day [Matt] was just sitting there and out of the blue says, ‘I want to get a tattoo,’” Lauren recalls. “I've never heard him mention a desire for a tattoo in 14 years."
"'I want to get Everly's scar down the center of my chest,’" Matt told her. "He said that he didn't want her to feel alone.”
Matt told 'GMA' that he liked the idea of becoming Everly’s “zipper buddy.”
"I heard Evie make mention about the zipper, just asking more questions than usual," he explained. "My thought was if I could get something that was a replica of it, we could be zipper buddies and she would not have that feeling of being alone.”
Lauren mentioned Matt’s idea to family and friends in passing — and by Christmas several family members had given Matt gift certificates to get his tattoo.
“Matt went to the tattoo parlor to make an appointment,” Lauren recalls to CafeMom. “They had an unexpected opening due to a COVID-related cancellation so he surprised her by coming home with the tattoo.”
He told GMA that the local tattoo artist was able to nail the tattoo, which looks just like Everly’s scars. Ever since Matt got the tattoo in mid-January 2022, Everly has been “thrilled that she had someone just like her,” Lauren tells CafeMom.
“In true Evie fashion, she started to tease him a bit,” she adds. “She's very much into a copying phase of copying things we and her brother say, so she told her dad that he was copying her. She also says, ‘My daddy got a tattoo like my zipper so that I don't feel alone … and he wants to be special like me.’”
Everly’s 10-year-old brother Jack told his parents that he wants to get a matching tattoo, too, when he turns 18.
"It really makes me happy that they look the same," Jack told GMA.
Lauren was also inspired to get her first tattoo — an EKG line with Jack and Everly’s initials — on her forearm. Now Everly has her tribe.
“When we got Everly's diagnosis prenatally — we felt very alone even though we had many supportive family and friends around us,” Lauren explained to CafeMom, speaking of how lonely those first few years were. “It felt like we were the only ones going through this.”
Lauren says that meeting other "heart moms" — moms whose kids have congenital heart disease like Everly's — has helped enormously and given them a community to share their experiences with.
The parents decided to share their story to raise awareness — soon everyone would know about Everly's condition and her dad's loving gesture.
“We had zero idea anyone would like this story so much,” Lauren says. “When we were asked to share it initially, we were shocked. We had no idea people would react as strongly or emotionally to it as they have. But we are willing to share it if it raises congenital heart disease awareness and awareness of the incredible things hospitals are doing for these kiddos … and raise awareness of incredible foundations that help and support hospitalized kiddos,” she said.
Jack and Everly even wrote a book together, Happily Everly After, with the foundation Books That Heal. All the proceeds will go to Advocate Children's Hospital's Heart Institute.
There is no cure to Everly’s condition and sadly she’ll need another surgery soon to replace a conduit that was put in her heart in the past.
But her family is determined to keep things as normal for her as possible. The 4-year-old now goes to preschool and takes dance classes — even though she sometimes gets tired and needs to rest from the medications she takes, GMA reports.
"Our hope for Evie is that she gets to live the life she wants to live," Lauren told the show.
After seeing the response to their story, the Backes are also happy to know that she'll never have to go through it on her own.
"When we are helping other families, I say to the kids 'Sometimes strength comes in knowing you aren't alone,'" Lauren tells CafeMom.
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